Italy

When you wake up Friday morning I will be landing in Florence, Italy.

This is a trip we have planned for a long time.  The airline and hotel reservations have been in place for months.  Because our life is more predictable than it used to be, we didn't bother with trip insurance. Of course we were going to go.

Then, early in the summer, Steve's dad got sick and we weren't sure if the trip was going to happen so all plans were put on hold.

We brought my father in law here to our house and have round the clock caregivers. When he moved in here at the end of July we weren't sure what was going to happen. With the right kind of care, however, he has stabilized and is comfortable.  He lives in Maggie's room so our life has come full circle.

Steve's siblings encouraged us to go on our trip and they are both coming here to manage their dad's care while we are gone.  We couldn't do it without that help and I am very grateful.  I confirmed the reservations and made a few more plans. Somehow, though neither of us really got excited about this because of the situation.  I think neither of us believed we were really going to be able to go. Now were are just 36 hours away from departure and excitement is building.

As we make the final preparations for our trip, I find myself in the familiar position of orchestrating the needs of a medically fragile individual.  Though we never attempted a trip this long when Maggie was with us, the similarities are uncanny. Instead of shift nurses and therapists and bus schedules, it's visiting nurses, caregivers, and social workers.  Supplies are laid in and I will stock the groceries for the first part of the trip. There is also the matter of making sure Steve's siblings know how to use the remote and other household things, and know when to put the garbage out. And, because this is San Francisco, we have to warn them of the car break in problem and plethora of parking tickets.

I think it's all done. I think everything is packed. Passports are ready, boarding passes will be printed. Things will be forgotten and we will manage without them.

Ciao.

What a long strange trip it's been.

I took a trip to Seattle last week. We spent four days with Steve's friend Chris and it felt like we were gone for weeks.  It was a great break.

But traveling is still so odd for me.

 As we sat on the plane waiting to take off, I felt so strange. After years of being tethered to home, it's still really odd for me to just GO somewhere. We had maybe three weekend trips in the 20 years we had Maggie and each took incredible planning and arranging and pleading and begging. We've probably had five overnight trips in the 18 months since Maggie passed away and it only requires finding someone to watch the dog. It just doesn't feel right and I wonder if it ever will.

It's not guilt, I don't feel guilty at all. And it's certainly not gratitude. Not at all. I wish I still had those issues in my life. It's just strange to not have to worry about the things that ran my life. I can just go anywhere I want anytime I want, but I don't feel free.

I feel like I have an excellent secret that others cannot really understand. Having Maggie in my life was like traveling to an exotic land. I had experiences that I can't really explain. Those experiences shaped me and made me who I am. Now that exotic adventure is over and I'm supposed to get back to "normal," but I don't even know what that is.

Perhaps I'll figure it our, perhaps I won't.  It doesn't matter. I'm still reveling in the experience. It was a great time.

"Lately it occurs to me...what a long strange trip it's been."

And if I'm going to quote the song, we should get to listen to it.  

Earthquakes and Ireland

Traveling has not been part of our life for many years.

We did a little when Maggie was young and easily transportable. She didn't have a trach yet and she was light as a feather.  In 1998, 16 years ago, we took two trips. We went to Philadelphia and Washington DC in the spring and in the summer of that year she was the flower girl in her cousin Kelly's wedding in Montana.

 The year before that Maggie and I also took an incredible trip to Lourdes France with the Knights of Malta when she was three. Steve  and the boys stayed home. That trip had about 50 doctors and nurses so we felt pretty safe. As her care became more complicated all of that stopped. Even our annual week at Lake Almanor came to an end. That was fine, because that's what we had to do.

Steve and I never got away together until two years ago when we went to New York for four glorious days. It took me months to get the approval for additional nursing time, staff the nurses and create a safety net in case someone couldn't show up. Maybe three months of arranging logistics for four days off. Almost not worth it. Almost.

In January of this year - a month before we lost Maggie - Steve said, "Let's go to Ireland." I smiled and said great idea but inside I knew it would never happen. There was no way I could make the arrangements for a longer trip and I would not be comfortable being out of the country and unable to get back to her easily in an emergency.

Then February happened and Maggie was gone. The logistics that ran my life were suddenly not an issue. We were floundering and sad and needed something to look forward to, so I reminded Steve about his desire to go to Ireland and we decided to do it. Since then the only bright spot has been the  mystical trip in our future. It was so far off, we thought it would never get here.

But that day has arrived. Tim will stay in the house and take care of things at this end. We leave this afternoon and have a fantastic trip planned.  And while I am excited and nervous, and even painted my toenails bright green, I find myself a bit conflicted, guilty and a little melancholy. I would give anything to be complaining that I am stuck here and cannot travel, but that's not true anymore. It's confusing.

Then this morning there was a major earthquake that woke me at 3:20 AM and I never went back to sleep. I figured that was a sign: Steve and I are taking our first ever international trip together and the earth moved. Selfishly, my first thought was "God, I hope the airport stays open." That told me I really was psychologically and emotionally ready to go.

I grabbed one of Maggie's scarves and put it in my bag; in fact I picked a green one so I can bring my little leprechaun with me.

I will check in from the Emerald Isle. 

My thoughts and prayers are with those in Napa and Vallejo and other areas who were injured and/or suffered property damage in this earthquake.

Just a little off the top, Doc.

Another random memory.

As I was brushing Maggie's hair this morning I noticed the large spot on the back of her head where the hair has broken off from the constant movement of her head against the headrest. It's been there for years. It's not a bald spot exactly, but the hair just breaks off after it gets around 1/4 inch long.  With the configuration of the new headrest (which still needs some work) there is a chance her head won't rub and maybe, just maybe, her hair will be able to grow back there. It doesn't really matter, no one can see it; but it would be nice.

Thinking about that made me remember the 50+ times Maggie had surgery to repair or replace the shunt in her head and would come out of surgery with half of her head shaved. It was hard to see, but like everything else we got used to it. It takes about 6 weeks for the hair to come back in to cover the spot fully and then it would not be noticeable.  (As a matter of fact, the spot I'm describing on the back of her head looks like she's about 7 weeks out from surgery.)

This was just a small rather inconsequential part of the drama we went though all the time. When your child is headed for brain surgery, the last thing you care about is her hair, at least the first 25 times. Then you get more practical.

In 1998, when Maggie four years old, she was scheduled to be the flower girl in her cousin Kelly's wedding. We were all heading to Montana for the wedding. Then, as now, we were never sure until the day we left if Maggie would be stable enough to make any trip or outing and my family learned to go with the flow. It would have taken a lot for us to cancel this trip, though.

About a month before the scheduled trip, Maggie's shunt failed again. She needed surgery. Sometimes these things came in clusters and she might have two or three surgeries in a couple of weeks. We crossed our fingers that it would work the first time so we could make the trip.

We were in pro-op going through all her history and allergies etc. The anesthesiologist was there as was the neurosurgery resident and the surgical nurse. When they were wrapping up their questions they asked if we had any questions. Steve and I had been through this many times and were very familiar with the procedure. He was surprised, then, when I said, "Yes, I do."

They all looked at me and I asked, "Who is in charge of shaving her head." The resident looked at me puzzled and said, "I am."  I looked right at him and said - "Do not shave any more hair that is absolutely necessary. She has to be in a wedding in a month and I don't want the pictures to be wrecked." Steve rolled his eyes and the anesthesiologist and the nurse both started to laugh. The resident looked more puzzled than ever. Very few parents give beauty instructions to a brain surgeon; but there is a possibility I am not like other people.

Maggie came out of surgery like a champ,  the procedure worked the first time and we were able to make the trip. And my fashion instructions worked too. Maggie had just about a two inch bald spot that never showed in any pictures.

Sometimes it pays to be practical.